Donald Trump offers to help Charlie Gard after UK court rules life support machine to be turned off

[Boiler 47,526]

2 minutes ago, bcking said:

It is has because there has to be some push forward in order to continue to advance medicine. There is still so much we could do that we can't yet, and if every system just focuses on the "basics" that may make it harder to progress.

 

That being said, moving an infant across the world for a treatment that isn't even studied for his disorder, has never been used in even animal models in his disorder, is a waste of resources and is not fair on the child. That is very different from the woman with EDS who needs a decompression and fusion and the NHS can't offer any surgeon trained to do it. Though I'm sure there are women just like her in places in the US in a similar dilemma with their insurance not wanting to cover them to go to another state, to an advanced center (Barrow etc...). If those centers have published their success with their techniques, part of their obligation should be to either bring people to them to train them, or to go out and train others. Surgery is one of those things where you can't just release a new procedure and have it take hold like a medication. You need hands on training.

Not saying there should be no research but that should not form part of the funded system, however that is funded.

 

Lots of research happens now that is not part of the system, and no I do not expect everything that could happen to me to be catered for. I think it is slightly more important that my County has a Doctor than spending more on flying one person half way around the world for experimental treatment.

[yuna628 9,878]

9 hours ago, bcking said:

I agree with a lot of what you said but a few points:

 

1. The question of whether an infant can suffer is an interesting ethical question, but there are usually fairly simple ways we can judge if they respond to pain. Interventions (moving the ET tube for example) will cause their heart rate to ride. Conversely, tachycardia resolved with morphine related medications is usually pain. Now you could argue he isn't experiencing those painful stimuli like we do, but if he has those responses the best we can say is he has intact pain receptors.

 

2. The idea that not dying at home is somehow not dignified for him is just wrong, in my view. If anything what isn't "with dignity" is prolonging suffering with no end in sight and no reason. Furthermore, it isn't simply an issue of "not allowing" his parents to bring him home. From what I've read it seems that he is mechanically ventilated. In order to go home he would need a tracheostomy, which likely hasn't been done. That surgical procedure would have the same ethical dilemma that this experiment drug therapy would have. What is the point? It is a surgical procedure, with the pain that goes with that, with no purpose.

 

Also, while I hope you have never lost a child in a NICU and so you hopefully have no personal experience, the entire community makes it as peaceful and dignified as possible. Most NICUs have designated spaces, and in sure GOSH is the same. We have a room that is decorated like a nursery, with no wiring, no oxygen hook ups. It is purely for the parents and the child to be alone as long as they need. It isn't perfect, but death never is and I wouldn't say it isn't dignified.

 

3. The issue of "what do we have to lose" is part of the problem if you ask me. That is a very selfish question. The parents are asking what do THEY have to lose. The infant, in the meantime, is potentially in pain with no reason or understanding. Yes the infant will die either way but again I go back to what one would really consider "dignified".

We did not lose our personal child in the NICU. But we did lose our nephew in an NHS NICU. He took his very last breath while in my husband's arms. I firmly believe that the child could have been saved had he received proper medical intervention stateside, likely in the great care units at Hopkins or even a different hospital in London. I won't go into detail at what the local hospital did to mother and baby or the condition - but it was completely unethical and led to the suffering of everyone involved. Furthermore they did not provide the mother with enough information to make decisions on the unborn baby's health. They did give her an option to abort but pushed heavily to instill hope that the condition he had was possible to survive (it is but certainly not in the actions they took during delivery and then treating the child in the hours after birth).

 

If the elderly and end-stage cancer patients are allowed to make hospice decisions to 'die with dignity' in their homes surrounded by family and friends, so too should the parents of this baby. It is the parent's wishes, and they should be able to honor that. I have yet to see a single elderly cancer patient in my husband's family and group of friends to have been treated with dignity by the local NHS - one was even told ''oh well you have had a good run ol' boy''. When my sister started experiencing spinal and neurological symptoms that (for insurance purposes were required to get injections instead of proper treatment) I started doing some research on her condition and the best doctor in the state to treat it. He immediately got her ready for emergency surgery - waiting too long would have caused perma paralysis and nerve damage. In the UK, while this condition is classed as a 'medical emergency' doctors rarely will diagnose it or will wait so long to even review test results, the patient becomes wheelchair bound and loses some bodily function. This has led to many hospitals in the UK being sued and the rise of support groups for patients struggling how to navigate the NHS with the condition. These are just some of the problems I've seen about the NHS.. there are others - the biggest being that funding for hospitals in wealthier areas is far superior to those 'elsewhere'. Going to the wrong hospital may very well result in death.

 

That is not to say there are not problems with the US system. Our local hospital is dreadful compared to those in Baltimore from much personal experience. I sent my mom to the best doctors outside of this county we could, while fearful our family friend suffering from the same cancer was not receiving the best care at the hospital his family chose inside county.

 

Parents are selfish when it comes to their children... and to a degree this is the same emotion experienced when we are with people that we love that we don't want to die. We try and do everything in our power to help or keep someone alive. I do not believe a government has the right to strip parental rights away in cases where parents are trying to seek out treatment or perform last rites according to their wishes. I understand the hospital's position that it will not effect his outcome, but unless it is a situation where a child is suffering from abuse and neglect in medical care - I do not believe the government has a right to be involved. This is no different to me than a US case, where the husband and wife already had a plan in place for her end of life wishes - and the parents fought legally to keep her 'alive' against their wishes. When it is a newborn the right regarding end of life care should fall to the parent. There comes a point when if nothing can be done, and the parents wish to go for other options against their advisement - perhaps the hospital should let go. That may sound unethical to you, being a doctor.. but situations like these start to become nonsensical.

[bcking 3,157]

1 hour ago, Boiler said:

Not saying there should be no research but that should not form part of the funded system, however that is funded.

 

Lots of research happens now that is not part of the system, and no I do not expect everything that could happen to me to be catered for. I think it is slightly more important that my County has a Doctor than spending more on flying one person half way around the world for experimental treatment.

Research should be part of the "funded system". We can't just rely on private organizations to fund research. While they do contribute a lot, we also need national efforts that focus on advancing medicine.

 

That being said, it seems we agree on this particular case. Flying one child across the world for a therapy that I wouldn't even call a "treatment" or "experimental" for him is a complete waste of resources. It hasn't been studied at all in his disease, in any model system. That isn't research, that is just really expensive snake oil.

 

1 hour ago, yuna628 said:

We did not lose our personal child in the NICU. But we did lose our nephew in an NHS NICU. He took his very last breath while in my husband's arms. I firmly believe that the child could have been saved had he received proper medical intervention stateside, likely in the great care units at Hopkins or even a different hospital in London. I won't go into detail at what the local hospital did to mother and baby or the condition - but it was completely unethical and led to the suffering of everyone involved. Furthermore they did not provide the mother with enough information to make decisions on the unborn baby's health. They did give her an option to abort but pushed heavily to instill hope that the condition he had was possible to survive (it is but certainly not in the actions they took during delivery and then treating the child in the hours after birth).

It's obviously difficult for me to speak much about the case without knowing any specifics. I'm sorry for your family's loss. There is very wide variability of quality in the USA, just like there is in the UK when it comes to NICU care. As you mentioned, if he was at one of the larger NICU's in London (GOSH, Evelina) his case may have been different, just like at major centres in the US. There is a large "hands on" component to Neonatology, and there have been studies that sjpw that centers that care for particular cases more often have better outcomes (CDH, Gastroscisis, congenital heart disease etc...). Even just with prematurity, there have been some recent studies comparing outcomes for infants born at the borderline of viability at centers where their resuscitation is routine and done every time vs centers who do it on a "case by case" basis. Outcomes for the smallest and youngest infants is better at the places where they try on every baby born.

 

The care you provide in the first 10 minutes of life unfortunately can dictate the rest of the course of care and can significantly impact the outcome such that even transferring the child may not have made much of a difference. Again I'm obviously speaking very generally since I don't know any details. Transportation of extremely premature infants is one of the most dangerous and highest risk activities you can do. It is always better to transport the mother prior to delivery to a center who is more adequately prepared to care for the child, than to wait until after delivery and then transport the baby. That is well documented.

 

1 hour ago, yuna628 said:

 

If the elderly and end-stage cancer patients are allowed to make hospice decisions to 'die with dignity' in their homes surrounded by family and friends, so too should the parents of this baby. It is the parent's wishes, and they should be able to honor that. I have yet to see a single elderly cancer patient in my husband's family and group of friends to have been treated with dignity by the local NHS - one was even told ''oh well you have had a good run ol' boy''. When my sister started experiencing spinal and neurological symptoms that (for insurance purposes were required to get injections instead of proper treatment) I started doing some research on her condition and the best doctor in the state to treat it. He immediately got her ready for emergency surgery - waiting too long would have caused perma paralysis and nerve damage. In the UK, while this condition is classed as a 'medical emergency' doctors rarely will diagnose it or will wait so long to even review test results, the patient becomes wheelchair bound and loses some bodily function. This has led to many hospitals in the UK being sued and the rise of support groups for patients struggling how to navigate the NHS with the condition. These are just some of the problems I've seen about the NHS.. there are others - the biggest being that funding for hospitals in wealthier areas is far superior to those 'elsewhere'. Going to the wrong hospital may very well result in death.

 

That is not to say there are not problems with the US system. Our local hospital is dreadful compared to those in Baltimore from much personal experience. I sent my mom to the best doctors outside of this county we could, while fearful our family friend suffering from the same cancer was not receiving the best care at the hospital his family chose inside county.

 

I know a lot less about elderly care in either country though I have heard similar stories from the UK. My wife's mother volunteers with a program that does outreach to seniors in independent living centers (my mother in law used to visit ladies at least once a week to keep them company). One such older woman had a stroke and my wife and her mother both visited it several times in the hospital. The things she was describing were indeed quite upsetting. This poor woman had family that rarely visited (if ever) and it was quite obvious that without family to advocate for you, a lot of things get overlooked.  How that compares to places in the US I have no idea. I'm sure we have great places for elderly care, but I'm also sure we have similarly poor places. There is a sense that the poor quality care is more common in the NHS than in the US, but I don't know of any studies. The scale is also very different. "Going to the wrong hospital may very well result in death" is very true in the USA as well, especially for NICU care. If you are in labour and are going to deliver an extremely preterm infant, delivering at the wrong hospital can have a major impact. Most larger centers cooperate with community partners to provide and reinforce training and adherence to NRP (Neonatal resuscitation guidelines) but the fact is that a place that may see 1 23 week infant born in a year is not going to be as prepared as the place that sees 200.

 

1 hour ago, yuna628 said:

Parents are selfish when it comes to their children... and to a degree this is the same emotion experienced when we are with people that we love that we don't want to die. We try and do everything in our power to help or keep someone alive. I do not believe a government has the right to strip parental rights away in cases where parents are trying to seek out treatment or perform last rites according to their wishes. I understand the hospital's position that it will not effect his outcome, but unless it is a situation where a child is suffering from abuse and neglect in medical care - I do not believe the government has a right to be involved. This is no different to me than a US case, where the husband and wife already had a plan in place for her end of life wishes - and the parents fought legally to keep her 'alive' against their wishes. When it is a newborn the right regarding end of life care should fall to the parent. There comes a point when if nothing can be done, and the parents wish to go for other options against their advisement - perhaps the hospital should let go. That may sound unethical to you, being a doctor.. but situations like these start to become nonsensical.

To the best of my ability, having never been in the situation myself, I can sympathize with parents dealing with the end of their child's life. I understand it is natural to want to do everything possible. I'm not aware of cases where hospitals/government have stopped parents from performing "last rites" on their children. We have representatives from all faiths and work with all of them as needed. Where intervention from the "government" gets involved is when the care that the parents are insisting on for their child is doing harm to their child without any benefit. The line between that and what you would typically consider "abuse" is quite cloudy if you ask me. If a child suffers every single day, we can do as much as we can to ease that suffering but continuing to allow it to go on for months because parents cannot let go becomes difficult to allow ethically. While we will never have quite the same attachment as parents do, we get emotionally invested and it is incredibly hard to see children suffer for that long with no end in sight and no purpose. We don't go down the legal route lightly, but when we do it is with the strong convinction that the decisions we are making are in the interest of the child. They may not be in the interest of the parents, but ultimately our patient is the child.

 

As I said before, the mechanics of just "sending a child home" to die at home as the parents wish is not as simple as it sounds. A child cannot go home with an endotracheal tube just taped at the mouth. That is not secure or safe. In order to be discharged home on mechanical ventilation you have to perform a tracheostomy in order to have a secure means of ventilation. We have had ethics meetings on several occassions just on that practical issue. ENT will generally just do it if we ask, but many doctors question whether it is ethical to put a child through a surgical procedure when it will not change the infant's outcome and will not provide any benefit. That is not nonsensical, it is "first do no harm". A surgery that has no benefit is harm. A surgery that benefits the parents (by allowing them to take the child harm), while having no benefit to the patient is still harm. The parents are not our patient. Similarly, if parents want to go for options that is "against our advisement" than they are wanting to pursue options "against medical advice". Legally you cannot go "against medical advice" for the sake of your child because they are minor and are unable to make the decision for themselves. People can walk out of a hospital AMA whenever they want, they cannot take a child out of the hospital AMA because going against medical advice is a form of neglect and abuse. Again we never like to go that route with the parents because we care about the children, we care about the parents and we understand that what they are doing is part of the stages of grief (bargaining/denial), but again ultimately our decisions are supposed to be in the best interest of our patient, no in the best interest of the parents.

 

I don't know how every state in the US does it but in Texas we do have a law called TADA that applies to these situations. It isn't invoked very often (for infants), in part because hospitals know that they will be faced with an onslaught of very one-sided media coverage. The media can interview the parents all they like and the parents can say whatever they want. Unfortunately hospitals aren't in a position to comment since it would violate HIPPA so invariable the media slant is always in one direction. 

 

Again to recap - Going through this process is not easy for anyone. The parents, the nurses, doctors etc... Many infants born in NICU's have primary nurses that take care of them for 3-4 days a week, 12 hour shifts, from birth until they pass away. In many circumstances those nurses have spent more time with the patient than the parents have. No one, on either side of the issue, is doing something because they want to be malicious, or they want to make anyone suffer. No one on the medical side ever wants to have to go outside the doctor/patient/parent relationship and involve a judge. When it happens it is from a genuine honest desire to do what is best for the child and it is after a very long process of trying to work with the parents to realize what is best. We use our medical expertise, our understanding of their condition, our understanding of pain and suffering, to try to help the parents realize what will and won't benefit their child. That is usually a very prolonged process before we even consider going the legal route.

 

Sorry for the length of the post. This is a very heavy topic and quite close to me. 

 

 

[Unidentified 2,930]

Just let the boy die with dignity instead of being a political pawn. 

[IAMX 3,055]

23 hours ago, jg121783 said:

You guys are ignoring the elephant in the room here. The failed socialist UK health care system. If socialist health care us so great why is nothing being done to try to save this kid?

I gotta say if "odds" were involved, my youngest sister would have died in her 20 year cancer fight. They said she'd never survive a relapse, and especially not a second bone marrow transplant.. yet she beat insurmountable odds to survive three relapses and at least four bone marrow transplants before winning her cancer fight. Or if I were to translate to this circumstance here, toss her out in the dumpster bin. The lack of value for life is just pathetic.

Edited July 4, 2017 by IAMX

[Unidentified 2,930]

6 minutes ago, IAMX said:

I gotta say if "odds" were involved, my youngest sister would have died in her 20 year cancer fight. They said she'd never survive a relapse, and especially not a second bone marrow transplant.. yet she beat insurmountable odds to survive three relapses and at least four bone marrow transplants before winning her cancer fight. Or if I were to translate to this circumstance here, toss her out in the dumpster bin. The lack of value for life is just pathetic.

Huge difference between having a fighting change and someone who, if treated will have 0% quality of life.

[IAMX 3,055]

22 minutes ago, Unidentified said:

Huge difference between having a fighting change and someone who, if treated will have 0% quality of life.

That's a pretty ambiguous assertion.

 

My sister was assessed to have an awful quality of life after years of fighting cancer (being told she wouldn't survive the fight, and evidently living on borrowed time post-first-relapse when she was like 5-6 years old) and beating it (when she was in her mid 20s), she was going to be forced to stay at home, be on a cocktail of medications, some of which made her more prone to illness, many of which helped contribute to more pain than they could legally prescribe painkillers to her for. In the end, she stopped taking medications that were keeping her organs functioning, causing organ failure and her to die, but at least it was her own decision and not someone else's. Everyone else should be given the full chance of living no matter how bad the odds.

 

Edited July 4, 2017 by IAMX

[Boiler 47,526]

27 minutes ago, IAMX said:

Everyone else should be given the full chance of living no matter how bad the odds.

 

I am going to disagree, I remember the first dog I had here, she was big and old and her hips went, ended up having her put down one of the hardest things i have ever done.

 

So where is the logic of doing it for a dog but making a person suffer?

[IAMX 3,055]

4 minutes ago, Boiler said:

I am going to disagree, I remember the first dog I had here, she was big and old and her hips went, ended up having her put down one of the hardest things i have ever done.

 

So where is the logic of doing it for a dog but making a person suffer?

Choice. Hippocratic oath to me says it all. 

[Boiler 47,526]

5 minutes ago, IAMX said:

Choice. Hippocratic oath to me says it all. 

Me too

[bcking 3,157]

40 minutes ago, IAMX said:

Choice. Hippocratic oath to me says it all. 

What part of the Hippocratic oath exactly?

 

That is part of the ethical foundation for which physicians and ethics committees rule in favour of doctors. We are intended to treat patients, not prolong suffering. Redirection of care (withdrawing care) is appropriate when continued medical support is causing suffering without benefit. 

 

A patient choosing to undergo more chemotherapy is very different. If you are an adult and can make the choice, then you can weigh the potential harm with your personal benefit.

 

Children, especially infants, cannot do that. So it falls to others. Usually the parents, but in some situations it becomes clear that making choices in the best interest of the infant (provide benefit, minimise harm) is impossible for parents because they mix their own interest with that of the child. It isn't there fault, it is perfectly natural. No parent should have to be the one to say that their children should pass. Many parents openly admit that they will fight the doctors until they are overruled only so they can tell themselves they did everything and they weren't the ones choosing to end their child's life.

[Unidentified 2,930]

9 hours ago, IAMX said:

Choice. Hippocratic oath to me says it all. 

Then I don't understand why it you have a problem with me saying let the boy die with dignity. Your sister came to the point where she figured out that dying was better than continue treatment. This boy has reached that point, there is nothing more we can do other than make sure he's comfortable to the end. 

[IAMX 3,055]

4 hours ago, Unidentified said:

Then I don't understand why it you have a problem with me saying let the boy die with dignity. Your sister came to the point where she figured out that dying was better than continue treatment. This boy has reached that point, there is nothing more we can do other than make sure he's comfortable to the end. 

wat?

 

She chose to stop taking her meds that were keeping her organs functioning because of the insufferable amount of pain she was in.. in her mid 20s after two decades of fighting not only leukemia but other cancers that resulted as well.

 

Rather than just "die with dignity" when she was around the age of this boy as her chances of living at all, never mind quality if life if she survived relapses were considered non-survivable, she fought and lived, and thankfully had a system that wanted to help her in the face of these odds. While I disagree with her ultimate choice, the fact that she had one is the point of my post. If this mentality espoused in this topic were used she'd have been tossed out with the other worthless lives merely because of the odds.

 

Feel free to twist this to your hearts content.

Edited July 5, 2017 by IAMX

[bcking 3,157]

53 minutes ago, IAMX said:

wat?

 

She chose to stop taking her meds that were keeping her organs functioning because of the insufferable amount of pain she was in.. in her mid 20s after two decades of fighting not only leukemia but other cancers that resulted as well.

 

Rather than just "die with dignity" when she was around the age of this boy as her chances of living at all, never mind quality if life if she survived relapses were considered non-survivable, she fought and lived, and thankfully had a system that wanted to help her in the face of these odds. While I disagree with her ultimate choice, the fact that she had one is the point of my post. If this mentality espoused in this topic were used she'd have been tossed out with the other worthless lives merely because of the odds.

 

Feel free to twist this to your hearts content.

The extend of this boy's brain damage is such that he will never be able to make a choice, even if we continued to keep him alive until he was 18. He will never be able to "fight" anything on his own.

[IAMX 3,055]

46 minutes ago, bcking said:

The extend of this boy's brain damage is such that he will never be able to make a choice, even if we continued to keep him alive until he was 18. He will never be able to "fight" anything on his own.

Yes, and I was told my sister wouldn't survive a single relapse. This excuse to violate the Hippocratic oath based on statistical probability doesn't resonate with me.

Edited July 5, 2017 by IAMX